Hi Dodie, good to hear from you. At this stage, 5 months in, good days and off days are (in my non-medical opinion) totally to be expected. You've had major surgery, in itself a huge trauma to your body, then become an instant insulin dependent T3c. As I said previously I didn't really engage with anything until late Oct 20 after my op in early Feb 20. So my willingness to read, write or sometimes even take phone calls was 'erratic'. My wife took the brunt of all that!!
Thank you for your detailed answers.
Libre 2 is a big help, and particularly in reducing the finger pricking. I find each sensor behaves differently, some close, some constantly high, some low and one that startedvhigh, went low, then failed.
But Libre is best used with a solid understanding of its limitations; they don't remove its usefulness and importance but knowing the limitations makes me feel safer about using it. There was a recent thread about Libre 2, with specific comments on Libre 2 limitations.
@helli wrote on 23 Dec 21 (along with a couple of other points from elsewhere):
" My advice would be to be fully aware of the limitations of libre.
- it may be less accurate for the first couple of days. Many of us insert it 48 hours before activating.
- it is calibrated to be accurate for “normal“ readings (between 4 and 8-10mmol/l). Therefore, always check with a finger prick test before correcting, treating a hypo or a high.
- Libre does not read blood sugars, which finger pricking does. It reads interstitial fluid which is behind blood sugars: claimed by Abbott as 2.1 mins for children and 2.4 mins for adults; more usually c.5mins and up to 15 mins. Libre 2 extrapolates the current trend to predict the last 15 minutes. This is fantastic most of the time. However, if the trend changes, it can over shoot. This is especially important when treating a hypo - always check your hypo has finished with a finger prick and treat again if still low; Libre will lag and could undershoot, saying you are still low even when recovery is happening - so trust your finger prick result.
- sometimes a rapid change confuses the sensor algorithm and it stalls, giving a Sensor Error message code 373; try again in 10 mins.
- some Libre sensors are faulty. If you have a sensor which is always off by a couple of mmol/l or reports a fault, report it to Abbott by phone (or e-mail). They will probably replace it and may ask you to return the faulty sensor so don’t throw it away.
- if your sensor falls off, Abbott have been known to replace the sensor if the adhesive is poor for your skin. There are several suggestions in this forum for improving adhesion or protecting the sensor.
Once you have got used to Libre, you can look to do things like:
- look for trends which suggest you need to pre-bolus earlier or later.
- look for trends which may suggest your basal isn't lasting between doses.
- see what happens overnight (do you experience Dawn Phenomenon or Foot on the Floor syndrome?).
- see what happens with exercise and general activity.
- you can use the phone app of LibreLink; or register and go to the LibreView website for more detailed analysis and reports.
If you are tech minded, you may want to consider converting the Libre to a CGM so you don’t need to scan it. There are a number of options for this depending upon your phone, whether your diabetes team are checking your readings online and how techy you are. But they are not official and written by techies for techies.
NB Diabox is written by a diabetic techie for diabetics. My addition. "
Excellent that you are under a Specialist Clinic. At this stage don't be afraid to ask them, particularly the DSN, about things that don't feel right. Quite early on I had an infection in my knee and my BGs had gone very high; my DSN guided me in temporary adjustments to my insulin dosing.
My GP, and I think this is true for many, is reluctant to change any aspect of my treatment unilaterally and needs, as well as expects, the Specialist Clinic to request or authorise any changes.
There is a list of checks that you should receive over the year as an insulin dependent diabetic; things like annual Eye tests, feet checks, etc. Are you already aware of these and is it clear to you which are arranged by your GP surgery and which by the Specialist Clinic? If not clear to you ask both teams which they are doing and review to see what is being missed! I've had to prod to get these to happen, after 2 yrs I've just had my feet checked for the 1st time, despite getting neuropathy in my feet during my chemotherapy; my oncologist knew and wrote about it in every Onc'y review, copies sent to GP - but I had to ask for the test (euphemistically referred to as toe tickling). My GP discontinued my periodic checks in surgery, since I was being looked at by the Spec team in Oxford (I live in Bucks); I was effectively excommunicated!!
You said (I mucked up the formatting): Over the time of discovering a gall bladder problem Dec 2020 I have lost 15kilos am now just 57 kilos and although steady at that weight I can't seem to put any more on. Would really like to be in the lower 60's. I am taking Creon the advice was 2 with snacks and 3 with main meal. Do sometimes wonder if they are the cause of my stomach cramps have asked about it and the jury is still out on that one.
I've not heard or read about Creon causing stomach cramps, but that doesn't mean they couldn't be the cause. I had dreadful digestion problems for 21 months, which needed me to gently persist in asking my dietician and then a referral to a gastroenterologist. Initially they worked on the basis that blood tests said nothing unusual and then a course of antibiotics did nothing - so it was to them as if it had gone away. But I knew from the daily incontinence and most unpleasant daily experience (!) that what was happening needed more medical attention. Eventually my persistence prevailed and the correct antibiotics seem to have resolved that problem. So don't accept that this is some incurable problem.
I know nothing about Lantus, but am on Tresiba which is 1x daily basal. I was initially prescribed insulin from disposable pens, but changed to disposable cartridges along with the permanent NovoEcho pen. This has several advantages: better for the environment - less waste; the pen can dispense half units of insulin, which I now readily take advantage of for my bolus dosing; the pen keeps a 'memory' of when it was last used and how much insulin was dispensed - so when I have a bad response post bolus I can check 'did I actually jab, how much, when?' and reassure myself on that point; the catridges occupy less space in our fridge. If that interests you ask your DSN and he/she can ask your GP to change your repeat prescription.
You are most welcome. No apology needed for the time lag in response; I asked a lot anyway!
I'm happy to sustain this dialogue under this relatively generic Newbie heading and feel free to ask about anything I've said that catches your attention.
I've annotated against your name that I'm following you; so if you had a specific topic you wanted advice on you could start a new thread on the General Messageboard and the site will alert me - with the advantage that your specific question won't get buried in this thread, thus others will have a better chance of seeing it and provide wider (and more experienced) advice.
It's stopped raining and the gale has abated so time to do some clearing up in the garden. All for now, Good Luck
